Unconventional Gratitude – an Essay on Chronic Illness

Recently I came across a beautiful piece of writing authored by a woman who, like me, had been battling chronic illness for many, many years. “I got sick the way Hemingway says you go broke: gradually, and then suddenly”, she wrote. And I loved it. The bells of truth sounded loud. Of course, one rarely develops chronic illness overnight, that’s completely antithetical. Somehow, though, my own illness with Lyme disease eluded my higher levels of awareness for well over a decade before the “suddenly” happened. Certainly I had my years’ worth of mystery health issues – many I assumed were normal things everyone else had too. I was also able to live a high functioning life in spite of the ones I couldn’t pass off as normal. Doctors had varying theories and plans of attack, none ever worked, and frankly, it was easier to just live my life. I put worrying about when the other shoe would drop in the back shelf of my mind. Not one doctor really ever gave me the choice anyways. Regardless, “later” came June 2013 when overnight my life experienced an abrupt curtain drop and then re-opened to an extremely foreign and terrifying landscape.

Lyme disease is a funny bug. Ask most conventional doctors and they may scoff about how it is the latest fad disease as if those of us afflicted are choosing to make a new fashion statement out of suffering. Without a piece of paper confirming your disease (Lyme testing is notoriously unreliable), your credibility among mainstream society drops like it did with that 15th doctor you saw last week. Grouping Lyme with like, you know, how kale is the latest and greatest, or how “everyone’s gluten intolerant now” is unfortunate. I am, by the way, gluten intolerant. I also think kale deserves its hype. But neither belongs on the same plate as Lyme or any chronic illness. In the 90’s we saw the emergence of the great era of Chronic Fatigue Syndrome, or jargon for “I don’t know what’s wrong with you”. With that came the Fibromyalgia club member of the month and then suddenly this group of outlying people stuck with indeterminate medical labels grew and grew. They didn’t seem to be immediately dying, so they were ignored. Don’t tell those skeptical doctors, but recent research has been finding that more and more Chronic Fatigue Syndrome and Fibromyalgia patients are actually infected with Lyme – we wouldn’t want to harm their egos. And although Lyme disease has been around for millennia, has had an official name since the late 70’s, and has been growing in media attention ever since, people (and MD’s) still don’t seem to understand exactly what it is or what it does. I can clear that up right now. It’s a stubbornly persistent bacterial infection. And it can do anything.

Lyme disease is an illness caused by complex, spiral shaped bacteria. I say complex because these guys really know how to survive. They can morph shape, drop their cell walls and enter your own cells to wear them as cloaks. They will confuse the immune system by changing their surface proteins (to avoid your antibodies), blocking Vitamin D receptors (an immune-modulating hormone), and will even go after and kill your immune system’s B cells and killer T cells. They are so good at this that those of us who have gone undiagnosed end up with an immune system so disabled by the time the disease is discovered that it can take years for it to fully recover, if ever. Lyme can build and congregate in cyst-like shapes as well as congregate with other forms of bacteria, viruses, and parasites under a thick sludge called biofilm to avoid threatening conditions like your immune system, antibiotics, or anti-parasitics. Dr. Joseph Burrascano, a well-known and leading Lyme physician, further explains why things become so complicated for us “Lymies” in his well-circulated Advanced Topics in Lyme Disease. He states: “…in the chronic form of Lyme, other factors can take on an ever more significant role- immune dysfunction, opportunistic infections, co-infections, biological toxins, metabolic and hormonal imbalances, deconditioning, etc.” Lyme has also been documented to mimic over 300 other diseases. I’m not here to go into all of the ins and outs of what exactly is Lyme disease. I’ve already plastered that every which way on my blog. Suffice it to say, fad disease? Yes please sign me up for all of that so I can sit with the cool kids. Cue eye roll.

Once my [very real] illness plunged me into what I equate with the Mariana Trench in the Pacific Ocean, I spent several weeks and months quite literally, drowning. Every alarm bell, siren, flashing light, whatever, was going off inside my body and it was constant. I didn’t just have insomnia; I had insomnia that raged as I hung off the guardrail on the cliff of psychosis. I didn’t just have heart palpitations; I had what felt like a caged bird in my chest, feral and flapping its wings against the bars in a frenzy of feathers all day long. I didn’t just have blackouts or low blood pressure or tachycardia; I spent months hunched over a pillow, rocking back and forth crying and clinging to consciousness. I didn’t just feel senses of impending doom; I would fall to the floor with dilated pupils unable to speak as waves of impending death deluged me like Niagra Falls. I didn’t just have brain fog; I fell to levels of dementia comparable to nursing home patients, led to their meals down the same halls they walked every day but never remembered. Pain, fevers, numbness, jolts, tics, spasms, and seizures would begin to increasingly wrack my body as my illness progressed. My strength, my athleticism, my hobbies, my loves, my passions, my favorite foods, everything I had filled my life with, was ripped from me. I became some sort of tortured creature that moved arduously through each day, void of any original thoughts other than whatever hijackings my overwhelming physical symptoms demanded of me.

One of the most difficult things about being chronically ill is that nearly everyone finds what you are going through incomprehensible. Healthy people, as you quickly become aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you. When it is you, in your loneliness, in your forced preoccupation with enduring your new reality, you ache to be understood in a way that you can’t be. You watch the rest of the world from your window; the mothers pushing their strollers full of children, the man in lycra that zips past your house on his fancy road bike, even the dog as he neurotically pulls his owner down the sidewalk sniffing and wagging and happy to be alive; and day by day you soon start to forget what “normal” feels like. It doesn’t take long before it is YOU that also cannot comprehend them. “How can that man on his bike not worry about his heart and breathing” I would think. “How can that mother interact with her children without appearing so encumbered by her body?” To compound even further the widening psychological gap between myself and the world, my illness took from me the ability to articulate and convey and express or anything that facilitates a lasting empathetic union for a long time. It was frustrating being stranded alone while enduring the cytokine storms on my perpetual island of Lyme. As Alphonse Daudet, a nineteenth-century French writer and sufferer of syphilis so eloquently put it, “pain is always new to the sufferer, but loses its originality for those around him… In the Land of Pain, everyone will get used to it except me.”

When you find yourself placed in that Land of Pain on the far away planet of the chronically ill, it doesn’t matter what pushed you there, life obviously changes. I suppose that is true for so many challenges we find in this world – grief, death, divorce, disappointment – but having experienced all of those things in my own life, I have found chronic illness to take the cake (literally… I can’t have sugar). I can find among my social circles people who have experienced all of those other things and we can share and talk and bond and hold each other’s hand through it. Those are universal challenges. But chronic illness is a completely different ballgame. And, speaking specifically regarding chronic Lyme disease, studies have shown the quality of life for its sufferers to rank lower than the diseases society reserves its greatest sympathies for. Diseases for which walks and fundraisers are organized for and ribbons and bumper stickers and even bracelets are marketed for. Diseases which receive billions of grant money to researchers for. To add insult to injury, treatment for chronic Lyme disease is often far worse than the actual disease itself and the patient undergoing treatment has no idea when they will get better, or to what level of functioning they can once again achieve. At times it seems as if you weren’t just put on another planet, but a black hole instead.

Due to the difficulties of diagnosing Lyme through serological testing, many of us have been dismissed by dozens of doctors. We have bled money from our bank accounts for treatments insurance companies won’t cover. We have bored many of our friends with repeated declined invitations. Worst of all, some of us have taken wounds from the painful arrows of blame for playing some sort of make-believe from our very own family members. In spite of all of this, modern day has provided a small little place for people like us. As proverbial lepers cast out of ancient cities, many of us sitting outside its solid borders turn to the societies of the ill on the internet. We scour forums and message boards and social media sites. We find each other. We form our own communities connected by wireless networks, Ethernet cables, and website servers. Chained and caged in your own life, but free to commune in these new communities, you sift through stories of despair, stories of hope, methods of treatment, and eventually, you form friendships and bonds and your own versions of digital hand-holding. My friend Sonya, living on the other side of the world, recently wrote to me that she wishes she could just be “normal sick, instead of dying sick”, and I deeply understood her though I’ve never physically met her. You find something special in your new communities. You find your new, peculiar, ailing self, in others. You find strength to endure. It gives you this wonderful yet intangible place to cope. And sometimes, one of you recovers and walks away and back through the gates into the life of the living. You hope, someday, that it will be you.

Regardless of the duration of your illness, survival depends on learning to build something new from your different reality. If life is a canvas then chronic illness only gives you one color to paint with. I have seen many who have succumbed to living black canvases, or worse, won’t even pick up their brush at all anymore. As I write this, I have been actively sick for 20 months now. It took me a long time to mourn the loss of my former self. I held on to her lifeless shell for months like a cicada cumbersomely dragging around its shed exoskeleton. The former me, she was strong. She did yoga and handstands and could run for miles. She laughed and she chased the dog around the house and she was ambitious and funny and so capable of whatever she put her mind to. She went through life living in the freedom that she had no sense she lived in a body except as a thing to smell the rain and taste good chocolate and reach for the cold areas of her sheets with. I mourned the loss of her. I didn’t know what I was without her. I did everything I could to resuscitate her on my own. Eventually, though, I began to put her down. Throughout the course of my illness and more specifically, my treatment, a better version slowly bloomed. The catalyst; I made a choice. I decided I was going to take my one allotted paint color, pick up my brush, and live an Ansel Adams piece of art. I would make something beautiful of it. My Lyme disease provided me with an exceptional opportunity-in-hiding to strip away all of the superficial dross my former life may have contained. Now, every single suffering moment emphasized to me that there was a separation between my failing body and my untouchable spirit contained within, and I nourished it. As I did, it taught me that it was the spirit that was me and not the sum of my physical abilities. I grew that spirit, I released that spirit. She would love more freely and see more depth in the souls she would pass. She will ache for the whole of humanity more than for her own daily suffering, because she knows suffering. She will nourish perseverance, bravery, strength, and compassion. I chose to beat my Lyme disease, before actually beating my Lyme disease. I would live the most breath-taking monochromatic canvas I could. And I did.

My physical fight is far from over. I still undergo difficult treatment cycles of multiple aggressive medications and deal with many uncomfortable and disabling symptoms. My battle scars from illness-related surgery and not just one, but two PICC lines are still painful reminders of war. However, I am improving. My body is healing. Occasionally I look back on that frightened and freshly-ill girl. She is clutching her constantly pounding heart and stooped in the burden of her feverish and waning body as she stands at the bottom of Mount Everest. I see internal struggles written all over her face as she wonders how she is ever going to climb it. I watch her take each terrifying and uncertain step, and I just love her. I am so grateful to her for trying. I am so humbled by those who have loved her along her climb. I am eternally grateful to those who have even physically carried her when she couldn’t. I now relish each day that I get to spend in this gift of a mortal body as I continue to climb and push and fight and heal. I love deeply my fellow sufferers who have befriended me and still sit with me as we share life living on the outside looking in. In general, now, I just love. Chronic illness can’t take that from me.

Recovery also brings its own unique, special, and indescribable feelings. It is a magical thing and a thing full of miracles. I laughed and chased my dog around the house yesterday. It was even more joyful than I ever remembered it being before. Thank you, Lyme disease.

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I usually don’t reply to blog posts, but really feel compelled to express my gratitude for your articulate sharing of very deep and personal things. I love that you are intelligent and well-read, and express yourself well! Alphonse Daudet! I read him in high school in French and his deeper meaning eluded me. But I’ll got back to him now. The depth of your reflection is so refreshing, and gives the Lyme community a respectable voice. Many times these forums mostly register complaints.

it makes me shudder how similar your gradual slide for many years and then explosion of full on illness so mirrors my own.

The reason I finally began to suspect to suspect borrelia/coinfections, was reading so many stories (like yours) that had such a similar onset. I got very sick at 23 from mono. So we fully discounted lyme/coinfections because I wasn’t around ticks etc at that time (tested negative on elisa), and was labeled as cfs or post viral fatigue. Only once I tried abx many years later and herxing did I realize there was an underlying infectious disease cause. And once I started reading enough stories that had gradual vague symptoms for many years and then borrelia explodes, it helped explain a lot. I’d always thought borrelia presented as a rash and immediate onset of symptoms, plus I tested negative (which I figured meant something, uh, now I know that was a big mistake).

I’d had vague symptoms (concentration issues, fatigue issues, anxiety, sleep issues, very rare back of head shooting pain, lymph node discomfort) since I was a kid, 9 or 10, but I could still function very highly, but having read these stories and realizing borrelia can lay dormant or lowly symptomatic I could pinpoint this time in my youth and beginning of symptoms as the likeliest point where I had exposure to the underlying pathogens that ended up derailing my life. All my core debilitating symptoms that I now experience had been around throughout my youth, but in a much more nuanced, subtle way that allowed me to function, but always caused me to wonder, what the heck is wrong with me?! I could never put my finger on it and just chalked it up to my particular personality and genetic makeup.

Thank you for sharing your stories and experiences. It helps, we have to keep speaking out, and hopefully driving research and better understanding of these infections and how big a role they may be playing in human health. I think they could be playing a large role in quite a few cfs/fibro dx’d cases, but even more potentially interesting, a possible role in neuro-degenerative disorders (my hunch is they probably play a role/complicating factor in a decent subset of cases). Another interesting question is why some people harbor these pathogens but don’t get sick. With better much more accurate testing, we will be able to start answering some of these questions.

Wow our stories ARE so similar! I haven’t really written much about it (that I can remember) but I also got mono around 22-23 and was sick for almost two years after. Got the CFS diagnosis at that time. Thanks for your comment – spot on!

I am stuck not knowing whether I really am mentally ill or physically sick. I experience scary physical symptoms and also anxiety… but besides low blood sugar and low blood pressure no one finds anything wrong.
So I just pretend it is all in my head until I just can’t. Maybe they’ll find out what’s wrong during my autopsy, but that is doubtful… nobody cares. : (

Thank you so much for posting this. You captured this experience in such a profound and accurate way. What an incredible gift to our community – people with Lyme or co-infections, people with other chronic illnesses, people who love us and want understanding for us – thank you!

Yes. So much yes. Thank you for so beautifully expressing something that’s often so difficult to convey, especially for those of us with “Lyme brain.” I’m an older mom of 2 small kids, just turned 48 today and have had Lyme/Bartonella/ehrlichia (and who knows what else) in my body for what I estimate to be 35 years or more. That line about watching the mom deal so easily with her kids… that resonates SO much with me, as does a lot of what you wrote. Please keep up the writing, you have an amazing talent and your journey is inspiring.

That was beautifully written. I relate to many things described. My lyme is portrayed in my body differently than yours, but I can still understand much more than a regular person who is not ill. I especially admired how you described how bad the symptoms are in vivid imagery. If you had more to say, you could definitely write a great book if you wanted to!
Also I enjoy the cake puns. Your blog is pretty great! Take care. Warriors unite!

Thank blood you for posting what so many of us have gone through. I would love to hear what you have done to help with Lyme disease? I’m currently in the middle of going through all this. I’ve have been diagnosed with Chronic Fatigue, Sicca Syndrome, Epsteins Barr, and a overlay of Fibromyalagia. I was told that Lyme disease was not in our region. Yet, I know several people that have tested positive. Bottom line all these chronic Illnesses, the majority of chronic illnesses there are are no cures. You are just treating the symptoms for your quality of life. I would love to know what works for the majority of people. I know everybody is different but I feel that there has to be a common denominator that we can all benefit from. You have described exactly what someone with a chronic illness goes through from how your health is affected, to several doctors/Scans/blood work, Insurance, to financial hardship, among all the other hardships that goes with a chronic illness. However, Where do we go from here? What treatment works? Prescribed, Natural or combination of both. I’m personally to the point I’m done. I cannot financially keep trying to figure this out. So where do you go from here to survive just getting through the day. I’m emotionally,physically and financially bankrupt…sigh

Thank you for writing such s beautiful piece. I will be sharing this with others in my family because they cannot comprehend what it is like, not to be cold, but because it is like nothing they have faced.
I pray for those who are ignorant because one day it may be them.
I will pray for you.
Laurs

This was so awesome to read. You totally nailed it. You talked about seeing others walk their dogs or go running while we stand by and watch numbly. I’ve also lost the ability to write–I’m a writer– and while reading you, I felt wistful. I so hope to get that back, too. Slowly, slowly. In the meantime, kudos for telling how it is…. so beautifully. While I’m waiting to get my own words back, I’ll definitely share yours.

Wow what an incredible blog! It was just posted on the Lyme Disease UK FB forum. I can identify with everything you have felt during your illness. It took 4 yrs to get a diagnosis, the fight for treatment was another hurdle. Thank you for sharing

Just discovered your blog last night and I love it! As a fellow Lymie, I’m inspired by your choice to fight and appreciate hearing your thoughts on chronic illness. My husband has been very supportive too, but I still feel like he really doesn’t get it. I will endure on and hope to make it back through the gates into the life of the living (for real, not just the “pretending” like I feel like I’m doing now)!

Thanks so much! I don’t think anyone can truly understand what we go through, sometimes even fellow sufferers. It is a uniquely lonely experience at times. BUT, the life of the living is always in our future… I believe it!

To the captain of my ship who taught me to keep going forward during the storm,
to my friend who shared her wise experience of this journey and who helped me go through this until now by my own, I often wonder how would I’ve made it.
Thanks for your essay that made me cry, you’re dancing with words. ❤

Thank you Tara. I have 2 daughters with Lyme disease plus co infections. Like you, they’ve been infected for years. So many terrible lows punctuated by occasional, but brief reprieves. And so difficult to help the people in our lives understand. And so un-fun to discover the skeptical MD who suggests a psychologist to help with the array of psychosomatic symptoms… Yes, cancer would be easier. Even with good doctors we have no idea if or when life will ever resemble something within the spectrum of normal. I am proud of you for fighting to allow this fire to refine & strengthen your character. Although no one put a Super Bowl ring on your finger, you are every bit the champ and more. Like you, my girls have made the same choice. They may look frail on the outside, but they have amazing strength inside. Thank you for putting into words so many of the thoughts & feelings we struggle to communicate. So very helpful! Thanks so much.

am in such awe for the warrior spirit you have embraced. such a gifted writer. to experience and process and come to a point of acceptance-deliverance-transformation is the ultimate of human accomplishment and i sincerely salute you. In case you didn’t know, Laura Hillenbrandt (phenomenal author of SeaBiscuit and Unbroken) also is a chronic suffering acolyte (chronic fatigue syndrome). Look forward to more inspirational chronicles Tara.